But -- and this is the critical point -- deafness isn't one of them. Tay-Sachs is. Down syndrome, I submit, is not. So although it makes sense to screen for Tay-Sachs, it may not make sense to screen for far milder conditions. For that matter, there are innumerable contexts in which deafness is not a disability at all. In places where everyone is fluent in sign language, it's is just another name for a linguistic minority.
It's true that most people -- between 80 and 90 per cent -- who screen for Down syndrome will terminate the pregnancy if the results are "positive." I wish this weren't so, but I don't believe I should try to realize that wish by outlawing either abortion or prenatal screening. I believe I should try, instead, to persuade others that the possible eradication of Down syndrome just isn't something our species has achieved, or should achieve, any consensus about.
I didn't think it was worth it to screen for Down syndrome when Janet was pregnant in 1991. And back then I didn't have any idea that our "disabled" child would go on to learn elementary French or the characteristics of 40 different species of sharks. I didn't dream that he'd be such a capable swimmer and basketball player, or such an enthusiastic fan of Harry Potter.
Now that I know what Jamie is like, I've come to the conclusion that our fear of mental retardation is out of all proportion to the phenomenon itself, and that millions of "developmentally delayed" people can live happy and fulfilling lives -- far happier and more fulfilling than most of us "normal" and "gifted" folk have been able to imagine.
Occasionally, I run into parents of children with Down syndrome who are quite certain that no one should ever be able to make prenatal decisions with which they themselves would disagree. In the United States, for instance, conservative pundit George Will has recently written that the legalization of abortion, combined with prenatal screening, has led society on "search-and-destroy missions" meant to rid the world of people like his son Jon. "Without this combination of diagnostic advances and moral regression, there would be more people like Jon, and the world would be a sweeter place."
Perhaps. And perhaps the world would be a sweeter place if we acknowledged that prospective parents who choose not to bring pregnancies to term are actually making difficult moral decisions rather than engaging in "moral regression." That way, we could try to persuade people not to abort fetuses with Down syndrome -- or any other disability -- rather than coercing them into mandatory childbirth regardless of the circumstances.
But the world is not a sweet place, and it has only recently -- fitfully at that -- attempted to provide meaningful accommodation for people with disabilities. Some of them, admittedly, require substantial assistance; others, like Jamie, are easier to accommodate socially than, say, a selfish, intemperate "normal" person. Some require nothing more than closed captioning; others require "job coaches" -- if they manage to find work at all.
Indeed, as a society and as a species, we still don't seem to know what "normal" really is. We could think of the norm as (a) what's left over when we get rid of all the abnormalities, or (b) nothing more than the statistical mean in a fully inclusive society that incorporates every single one of us into public life to the greatest extent possible.
I prefer (b) myself, and I think you should too; but I worry that uncritical advocates of prenatal screening are thinking in terms of (a). Which leaves us with a bitter paradox -- that even though we haven't begun to explore the ways in which we could include people with disabilities in our society, we devote precious time and resources to developing better ways of spotting them before they are born.
Michael Bérubé is a professor at Penn State University and the author of Life As We Know It: A Father, A Family, and an Exceptional Child.Report Typo/Error
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